In November of 2012, Dr. David Rye, Emory University School of Medicine’s professor of neurology and director of research for Emory’s Sleep Program finished a study and found a treatment for people living with hypersomnia. The results of the study are here: http://stm.sciencemag.org/content/4/161/161ra151
But for a better understanding of his work, I suggest you read the following article: http://www.lastwordonnothing.com/2012/11/22/re-awakenings/
I had done some research on this treatment, flumazenil, in November of 2012, but at the time, I could not get my hands on the medication. I have been following the progress of flumazenil in some patients that are using it. And their results have been very positive. The finding from the study is that the cerebrospinal fluid in some patients with hypersomnia has a substance that acts like a sleeping pill. And flumazenil is the medicine that is used for waking up patients that have undergone anesthesia or for patients that have overdosed on diazepam medications. So flumazenil was used and some of the patients woke up on it.
I contacted my doctor about one month ago concerning using the medication on a trial basis. Back in 2012, flumazenil was only offered via injection. However, today it is in a cream form. My doctor agreed and I have been using flumazenil for over 30 days now. Since my appendix surgery and tooth work (crown and root canal) both of which anesthetics were used which put me into an episode, I have been struggling. It is true that my episodes are not as deep as they were, but I still have been living in a dream-like, semi-conscious state for the better part of 7 months (sleeping 12-18 hours per day) with a few weeks of health here and there. I have been keeping a very detailed log of my experience with flumazenil. And for me the experience so far has been very positive. I have been AWAKE for over one month now. I know some people will wonder if this is a coincidence, but I can feel myself falling sick (dream-like) when the flumazenil wears off, I apply the cream, and within minutes I am feeling better-Awake! If I am not taking what I need, I will be sick. And the medicine has instantaneous impact.
I understand that this may or may not work for some people. And only time will tell the long term efficacy of this drug. But because our illness is so rare, it is very difficult to find the funding for a treatment or cure. It takes ten to fifteen years for a drug to go through the process of biological discovery to FDA approval. And this drug has already been approved for human use by the FDA. The drug is being used as a repurpose drug for hypersomnia now. I feel it is important to be transparent with this trial because one way people with rare illnesses can be helped is through the exchange of information.
There have been no negative side effects for me! There is concern about mixing flumazenil with diazepam as one medical research paper stated that someone went into seizure who was being treated with flumazenil for a diazepam overdose; however, it is not clear if the flumazenil or the diazepam caused the seizure. If you want to learn more, please seek medical advice as I am not a medical professional in any way.
To everyone negatively impacted by hypersomnia, know that hope, support, and advocacy can lead to a treatment and a better quality of life. I don’t know if this medicine will work for you, and I don’t know if it’s the right medicine for you to try, only you and your doctor can decide that. But I do know that being transparent and sharing information is how we can help each other.
I am so grateful for Dr. Rye’s work and the work of all the researcher’s at Emory University. They are thinking outside the box and discovering a new way of looking at hypersomnia.
And one last thing, it is so important to find the right doctor for you. My doctor (DR. Nathaniel Watson) works with me to find solutions, he is a good listener, he genuinely cares about his patients, and he is open to discussion. Look for those qualities in a doctor so that you can find a treatment that works.
If you have any questions, please feel free to contact me.
Disclaimer: No content included herein is intended to be interpreted as medical advice. Alanna Wong and AlannaWongLife.com are not a medical adviser and do not provide personal medical advice. Alanna Wong and AlannaWongLife.com exists for educational purposes only. You hereby agree and understand that Alanna Wong and AlannaWongLife.com do not offer any medical advice and that you are responsible for consulting a medical professional if you have or think you have Kleine-Levin Syndrome, hypersomnia, or if you have any medical issue you are concerned about.